chronic or post treatment lyme disease

hey all, I have a question for you. what are the chances of ending up with chronic Lyme if you were not treated until it you were having neurological issues? I was diagnosed in 2000 but only because I had 2 episodes of optic neuritis and had begun experiencing some numbness and tingling in extremities. I was put on 28 days of IV antibiotics and declared cured. I have.continued to have symptoms for the.last 12 years and no doctor seems to be able to figure out what is wrong. is chronic or post treatment Lyme disease possible and who do I see about this? rheumatologist? thanks for the help!

Unfortunately, chronic lyme is likely since you did not see a lyme specialist; therefore, did not receive proper treatment. This scenario happens all too frequently. But there is hope.

Read the post at the top of this board titled "lyme newbies". If you want to go straight allopathic medicine you will need to find an LLMd (lyme literate medical doctor). You could also go alternative which, IMO, actually works best for cases where lyme wasn't treated early and has progressed to a chronic state. Heavy abx use over years and years is hard on the system and causes its own problems but . . . many go this route. You could also do a combination of abx and alternative. Salt/C is a very effective treatment for lyme. You could research, if interested and/ or take a look at the book The Salt/C Protocol for Lyme Disease by M. Fett.

Hi! I have to agree with Jen that it is entirely possible for you to have developed a chronic infection especially if you have exhausted many different doctors for multi-system (body wide problems) that no one can quite pinpoint the problem.

Unfortunately, finding a lyme specialist to have you properly diagnosed can be the hardest part of navigating this disease. If you want to see a true lyme specialist, check the list of Lyme Literate Medical Doctor's (LLMD) recognized by ILAID's. I've made many mistakes seeing people that i've heard treated lyme (and i'm in a major metropolitan area of 800,00 people) but many only treat on a CDC positive test which many lyme patients don't have due to inaccurate testing.

If someone you want to see only treats based on IDSA guidelines (and you should ask this before setting up any appointments), i would look elsewhere to save yourself time, money, frustration, and emotional pain of them telling you there's no help for you. For chronic infection, you need an ILAID's doctor.

And if the doctor you want to see hasn't heard of either the IDSA or ILAID's, then I wouldn't even consider them for treatment of myself, or anyone in my family!